Masaka
Cerebral Palsy (CP) activists in Greater Masaka Region have launched a campaign to ensure persons with CP get the liberty over their bodies and exercise their Sexual Reproductive Health and Rights (SRH).
CP is a neurological condition or disorder that affects muscle control, movement and coordination.
Through the campaign, they believe they will be able to make informed decisions, fight stigma and lack of key support systems in their condition.
This follows the lack of access to SRH services which has forced many families to resort to forced sterilisation. Sterilisation is simply surgery done to make a person unable to produce offspring.
However, this pattern has stripped them of the right to make decisions about having children and starting their own families.
Eddy Kanamugire, the Chairperson of Greater Masaka Persons Living With Cerebral Palsy Association, told Insight Post Uganda that some parents and guardians frequently do it in the name of protection without the affected individuals’ knowledge or consent.
According to Kanamugire, they are currently supporting 250 individuals with CP along with parents and guardians to advocate for their rights at all cost.
“Essentially, we need to create an environment where they are heard, their opinion respected and allow their rights to be fully exercised,” Kanamugire explained.
He said that such violations usually stem from widespread societal biases and systemic neglect mostly justified by false beliefs about what persons with CP are capable of.
He further added that parents, guardians, and caretakers often act out of fear or societal pressure, hence playing a crucial role in making these decisions on behalf of the CP individuals.
“The challenge is more in areas where specialised education and healthcare services remain scarce,” said Kanamugire.
He further revealed that some children with CP are often shocked to discover they were sterilised or subjected to vasectomy without their knowledge.
What escalates the problem is the uncertainty about how to provide special care coupled with societal pressures and negative comments hence forcing some parents to withdraw from addressing their children’s unique needs.
The 2024 census report, the number of Persons With Disabilities (PWDs) increased from 4.4 million in 2014 to 5.5 million with a significant number being persons with cerebral palsy.
Reproductive Challenges
Fahad Mukiibi, a resident of Kyabakuza town in Masaka City, finds hard time juggling both looking after and advocating for the rights of his 19-year-old brother Faswiha Muwonge, who is living with cerebral palsy.
Faswiha’s physical situation is combined with societal stigma and systemic neglect, especially concerning Sexual and Reproductive Health Rights (SRHR).
Mukiibi’s concern is not just about his brother’s peculiar condition, but the way some community members think this teenager doesn’t deserve to live a complete life like the rest.
“You see, even some natural basic things such as discussing access to SRHR services, his rights to relationships or starting a family are treated as irrelevant,” he recounted.
For households like Faswiha’s, stigma is not just a social burden, but a huge obstacle to accessing healthcare, dignity, and education for individuals with cerebral palsy.
According to Mukiibi, people often ask why they bother with Faswiha ruling that he will never marry or have children.
“Some even propose to take him for vasectomy but I chose to protect him and fight for his rights like any other person. It is really painful because they don’t see my brother as a person with dreams and feelings,” said Mukiibi.
However, Mukiibi’s story clearly reflects several other parents and guardians across Masaka region and Uganda at large.
Social Stigma, Neglect
Josephine Nakitende of Nyendo town, Masaka recounts the pain of witnessing her two-year-old daughter treated just like a human being.
“My family members and relatives disowned me but I found a new family among the parents and guardians of children with CP. We usually meet and share our experiences and solutions,” said Nakitende.
According to Asha Nantambi, a rights advocate and secretary of the association, CP individuals are always discouraged by the widespread stigma and the unrelenting negative comments from their communities.
As a result, Nantambi added, some parents and guardians end up hiding children from the public which denies them the right to association among other opportunities such as healthcare, education, and social interaction, which are critical for their development.
“The challenges extend beyond logistical needs and are deep in people’s attitudes and perceptions within the community,” she added.
She further appealed for awareness of the SRHR and strong support structures to empower families and ensure children with CP receive special care and opportunities they deserve.
Nantambi also emphasised the need for parents and guardians to form saving groups to support the needs of children with cerebral palsy.
“The cost of services for people with cerebral palsy is quite high. So we need to explore different alternative sources of income to support them and this requires collective efforts,” she said.
Specialist’s view
Dr. Simon Peter Kayondo, an obstetrician-gynaecologist, CP in parents does not directly pass on to their children but their incapacitation to take care of them.
“Maybe that’s what drives their caregivers to take away their reproductive rights. Nonetheless, they have as much right to have children and families as any other human,” he stressed.
Kayondo, who is also a Project Coordinator at the Association of Obstetricians and Gynaecologists of Uganda (AOGU), said that people with CP like any other PWDs have a right to special and affordable care in all facilities across the country.
However, Marie Stopes Uganda has initiated programs in Masaka district aimed at promoting inclusive reproductive health services to all people including people with disabilities.
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